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FARAFARA Cure FA

Meet the Community

You are not alone. The entire FA community, also known as the FAmily, is taking this journey with you. Meet a few of our dynamic people with FA below.  New Meet the Community interviews are posted every Monday, so be sure to visit often.  Please e-mail info@curefa.org if you would like to be interviewed for a Meet the Community post.
 

FARA Ambassadors

The FARA Ambassadors are a group of people living with FA who are committed to supporting FARA in the search for a treatment and cure. They represent the community by speaking at events, meeting pharmaceutical partners, giving media interviews, and more.

Meet the FAmily!


Clifton Raspberry

CliftonRaspberry1Name: Clifton Raspberry

Age: 35

Where do you call home? Spring, TX

Education (degree(s)? High School. I was an equipment operator and truck driver.

What is your relationship status? Do you have children? No, I am not married, and have no children.

What's a typical day for you? My daily routine changes. Errands, chiropractor visits, maybe wrench on a truck, caregiver visits, seeing my girlfriend, and/or watching TV in the evenings are typical.

How long have you known you are living with FA? I was diagnosed in 2004. Started showing signs in 2001. 

Are there any others with FA in your family? No others. I am adopted.

Describe your transition from walking to walker/wheelchair and/or any other adaptation you have had to take due to living with FA. After nearly breaking my foot, I decided to use adaptive equipment, and use a walker. My additional adaptation has been learning to hold on to things when I walk. 

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Jakob Mitterhauser

JakobM 3Name: Jakob Mitterhauser

Age: 24

Where do you call home? Vienna, Austria

Education (degree(s)? How will FA add to your future [career]? Bachelor of Science in Geography (2015) ; Starting my individual Master Urban Climatology and Urban Climate in October 2017. FA will not change my future career because I believe there will be a cure in 3-5 years and my progression is mild.

What is your relationship status? I am happy single. I live in my own flat in Vienna alone.

What's a typical day for you? Every day starts with meditation and balance exercises in the morning. This semester I am working on Monday/Thursday while going to University on Tuesday and Wednesday. Friday till Sunday is free and mostly used for fun with family and friends and time in nature. During the week I have physical therapy and mental training once and swimming twice.

How long have you known you are living with FA? (When and how were you diagnosed?) I have been diagnosed in Vienna in August 2011 after looking for a diagnosis for 6 months. I was 18. So, I have known it for 6 years. 

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Grace Smith

GraceSmith 1Name: Grace Smith

Age: 10 years old

Where do you call home? Austin, Texas

Education: I am in 5th grade.

Who do you live with? I live with my Mom Susan, Dad Scott, sister Stella (7yrs) and our dog Benji.

What's a typical day for you? In a typical day, I go to school from 9:30 - 2:00. I have a shorter schedule than my classmates and sister, because I get easily fatigued. On weekends, I can only do one big outing or event before getting tired. But I love being at home with my family, and have learned how to conserve energy while also having fun. I go to bed at 8:30, which also helps me have enough energy to enjoy the next day.

How long have you known you are living with FA? I was diagnosed when I was 8 years old. The first thing the doctor discovered was a murmur in my heart that turned out to be Hypertrophic Obstructive Cardiomyopathy. At the time of my heart diagnosis, I did not have visible FA symptoms. About 10 months later though, I saw a neurologist because my balance and coordination had become pretty poor. After noticing that I also had high foot arches, no reflexes, and poor proprioception, he immediately thought I might have FA. It was then confirmed it with a genetic blood test. 

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Holly Franz

HollyFranz1Name: Holly Franz

Age: 22

Where do you call home? Bedford, New Hampshire

Education (degree(s): BS in Marketing from Southern New Hampshire University

How long have you known you are living with FA? After two years of being misdiagnosed, I was officially diagnosed with FA at age 11.  Add a comment

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Jake Hayner

JakeHayner1Name: Jake Hayner

Age: 34

Where do you call home? Onaway Michigan

Education (degree(s): Some college

What is your relationship status? Single

What's a typical day for you? Parents get me up, help me dress, prepare meals, help with daily needs. I have a personal assistant that takes me to physical therapy. On the days I don't go, I have a workout routine I do at home. I may sit in my hot tub, visit my sister next door, and sit in the sun. I stand up in my stand up chair and listen to music. I watch a little tv, play a little PS-4, an maybe go for a ride with my mom.

How long have you known you are living with FA? About 17 years.

Are there any others with FA in your family? My older sister also has FA. She is 36 and lives next door.

Describe your transition from walking to walker/wheelchair. It was a very hard transition. I started to fall a lot, twisting and hurting my legs and knees. My parents rearranged the furniture so I had furniture to hold on to. They put up bars along the walls to assist me. I fought the wheelchair as long as I could, until I could no longer get around without it.  Add a comment

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